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Epilepsy in Young People

Seizure alert dogs

Seizure alert dogs are assistance dogs trained to detect the signs of an epileptic seizure in their owner, before it happens. They warn their owner of a seizure by barking, whining or jumping, giving the person enough time to get to a safe place. The dogs can give their owner an accurate warning between 20 and 45 minutes before the seizure. Seizure alert dogs are usually only given to people with poorly controlled epilepsy with ten or more tonic-clonic or complex partial seizures per month, and who haven't had medication changes for six months before they apply.

Quite a few people we spoke with had never heard about assistance dogs for epilepsy. A few said they were interested in either having a seizure alert dog or knowing more about them. 

One man said that, although he was interested in having a seizure alert dog, it would be a 'last resort' because he didn't feel responsible enough to look after a dog. He was also concerned that an assistance dog might limit his social life and relationships. Another person was worried that the criteria for having an assistance dog might be too strict for her to be eligible.

We spoke to one woman who'd had a seizure alert dog for five years. Holly has had tonic-clonic seizures since she was 18. She'd tried many different types of medication but none controlled her seizures. Her GP suggested applying for an assistance dog. Holly was initially meant to have a seizure response dog, who gets a person to a safe place after a seizure and seeks help. But it turned out that Elvis could in fact warn Holly before she was about to have a seizure.

 
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After Holly had had Elvis for a few weeks, she realised he was barking every time she was about...

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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I got a PhD scholarship and I started doing my PhD the following September, and the whole epilepsy experience changed because the summer before I started my PhD I got Elvis. My GP came up with the idea.

I've got Elvis in the summer before I started my PhD and things have been really very different since then. So Elvis is a wonderful dog and he was going to be a seizure response dog. So the idea was going to be that Elvis would, when I spontaneously started break dancing at inappropriate moments, and he would know that would be a bad thing, and he would then go and get help. I've got like a panic button, so things like that he would press, and he would bark a lot and make a bit of a hoo-hah, and just go and get help. So that would be good and that would help make me feel safe and that would be a good thing.

I'd had Elvis for about six weeks and he started barking once and he was sitting at the bottom of my chair and he barked, and I'd never heard him bark before so well I didn't hop down, more like I leapt down, off this ridiculously high chair, and then I had a fit. And that was really weird, I didn't know anything about it, and everyone just thought, oh, didn't really think anything of it, just did what they have to do when I have a fit. Then over the next two months I must have had I don't know, six fits maybe, and it became obvious to everybody around that Elvis was getting agitated and then barking before I'd have a fit, and it got to the point where I even remembered it, which means that Elvis had barked five or six minutes before I'd had a fit. 

So we talked to the support dog people about this, and they were just like, 'Oh well that's incredible. Do you think he might be intuitively telling you?' And I was like, 'Well yeah, that's what I'm saying.' We went up and had residential stuff and, yeah he was really, really good at it and just through everybody around him giving him lots and lots of positive reinforcement when he told me I was gonna have a fit, then he just got better and better. And it got to a point where Elvis could give me 15, 20 minutes warning before a fit, and that was great 'cos I could phone somebody, I could sit on the floor, or lie down with a cushion under my head, not to be in the bath, you know, the idea that I could even have a bath was like a new thing you know, because Elvis would be able to tell me it.

How do they know?
Each seizure alert dog is trained with its new owner so that they can learn to identify the owner's specific seizure activity. It is not clear how the dogs can identify when a seizure is about to occur. It is thought they may be picking up on unique signs of seizures' physiological or behavioural changes that the people themselves and those around them are not aware of. This could include pupils dilating or changes in facial expressions or colour. Seizure alert dogs are selected from rescue centres and go through a long training process - first in a specialist training centre, then in a foster home and finally with their prospective owner.

At first, when Elvis gave Holly a warning, she would get herself to a safe place and Elvis would press the panic button to call the ambulance. A doctor whom Holly saw only once at A&E, suggested that when Elvis gives her a warning, she should take medication to prevent having a seizure altogether.

 
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When Elvis gives Holly a warning, she injects fast-acting medicine into her gum with a syringe....

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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Now what I do is I have midazolam, buccal midazolam which is a liquid which you inject just through a syringe into the gap between like your gums and your lip, on the bottom of your jaw, and squeeze it through there. I don't really know much about it but I think it's something about the cells, or something or the blood being really close, there's not that much skin or that much barrier and so it gets into your blood quite quickly and it affects you quite quickly. Because Elvis now gives me 20 minutes notice and the buccal midazolam takes 10-15 minutes to start having an effect I don't go into seizures any more and that's nice.

Daily life
Like any assistance dogs, seizure alert dogs need a regular pattern in their life. This may mean that the owner needs to adjust their lifestyle.
 
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Holly describes her typical day with Elvis.

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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Well Elvis likes to get up really early in the mornings so I had to learn to get up in the mornings. He's just so excited by every new day and it's kind of infectious so he lies there and waits and as soon as I kind of start opening my eyes or anything, or move he's just wagging and he's just so excited. And if I haven't quite opened my eyes yet but he's thinking I probably should be, he does this thing where he puts his nose underneath my head and lifts my head off the pillow. Oh it's just the most annoying alarm clock in the world, but quite wonderful as well. And you know it's nice to be greeted every morning by somebody who's so pleased to see you, you know. It's just quite nice, so yeah we get up, first things first, Elvis needs feeding, Elvis needs to go to the toilet, they're pretty much done. It's not that much fun standing outside in the rain in your pyjamas picking up poo, but you know it's got to be done. I do it, you know looking after Elvis, and then that's Elvis sorted pretty much, that's all. He doesn't take him long to do his hair and things like that, and then I can get ready and then Elvis once he's had an hour for his breakfast to go down kind of thing, and that's handy 'cos that's pretty much as long it takes me to eat my porridge, do my hair, have a shower, do all those things. Then we set off and we go to work, we walk to work. It's a really beautiful walk to work and because Elvis needs his exercise and I just kind of think he's gonna be sitting under a desk or something all day, then he really ought to have stretched his legs and had some fun before he has to do that. I think if I'm gonna have to sit at a desk all day, I ought to have had a chance to stretch my legs and have some fun as well, so that's what we do. 

An average day, we've got a pretty much like a desk job I guess, sometimes I have meetings and things, and soon we'll be travelling a little bit more but I don't know how that's gonna work out yet. He entertains everybody in the office, keeps everybody on their toes and he just looks after me I guess. And lunchtimes I'll take him to the park so he can run around with a toy, use the facilities as it were. Then we go back to work, work the afternoon, and then we walk all the way home. In the evening, sometimes it can be a bit difficult with Elvis, he's a creature of habit, and he likes to be fed at certain times, so it takes a bit of planning. If I know I'm gonna go out of an evening straight from work then I need to make sure I've taken food into work so I can feed Elvis. I've been caught out on that before that I've thought that I had spare food, see my desk drawer's a little bit different to everybody else's so I've got all the dog's toys, and poo bags, things I need for walks, and there's another one that's like dog food, and the other one is dog bowls. You know like most people have staplers, envelopes, you know. They're Elvis' drawers so I got caught out once that I had forgotten that I had given him all the food that was there, and I hadn't bought any more in. And it's not fair to then drag him to a cocktail bar or a pub or something and make him sit there until like 9 or 10 at night, he's not been fed and well he wouldn't stand for it anyway I don't suppose. So I've been caught out before and I've had to rearrange my plans to meet them later or just cancel them 'cos I've had to come home and feed him which is a little bit annoying.

 
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Holly describes how she and Elvis sometimes clash over their preferences in music, going to...

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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Elvis is a bit rubbish with loud bangs and I really like rock music, so I can't really take him with me to go to rock concerts. He's useless with fireworks, so for kind of two weeks of the year we're pretty much, as soon as it's dark we're here with Led Zeppelin on, really loudly trying to drown out all the fireworks. He's just a nightmare to take shopping. He has his own ideas of what I should be wearing, I want to go to Gap, he wants me to go to Next, you know and we will stand in the middle of the street with some kind of like Mexican stand off sometimes and it's just ridiculous. He doesn't like nightclubs, and that's fair enough, 'cos I think I've kind of grown out of them a bit too, you know I'm not really interested, pervy men, loud really bad music, there's smoke, oh but that will have changed now. Anyway he doesn't really like them too much either. 

I didn't take him to New York with me because he can, like he's injected, he's got passport, he's allowed to do what he likes pretty much, well as long as he's accompanying me. I think in that way I'm his assistance person [laughs], 'cos without me he wouldn't get to do any of these things. I didn't [take him to USA] because I figured I was only going to be there for four days, and it was such a long flight and he has to go through so many horrible vet things to get to America and security. Getting into the US is difficult enough with security without a dog, and I didn't want them putting gloves on and checking Elvis. I thought you know he doesn't need to go through all of that. But then at the same time I didn't want to miss out on the opportunity of going to New York and speaking at this incredible conference so it kind of felt a bit, there's a bit of conflict there as to what I should've done. With the benefit of hindsight maybe I should've just put him through it, I don't know, but he had a wonderful time.

Freedoms and restrictions
A seizure alert dog can change the owner's life completely and give them independence that might not otherwise be possible. Holly said it was only because of her dog that she could live on her own, go to work and live a completely independent life. Holly says Elvis has changed her life and is 'worth his weight in gold'.

Any assistance dog is a big responsibility and needs 24-hour-care. For the dog to be able to do its job properly, it must constantly be with its owner, day and night. This can bring extra pressures and restrictions to the owner's life.

 
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Having Elvis has enabled Holly to live independently but has brought some new pressures and...

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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I think things have really changed with Elvis. I kind of say this quite often so I sometimes get a bit bored of saying it, but I kind of feel a bit sometimes that I swapped one set of problems for just a completely different set of problems so rather than being scared you know those kind of voices, I don't have to have them [worries] any more and I don't have to have seizures anymore, I don't have to end up in and out of A&E anymore, you know I don't wet myself in public anymore. I don't do any of those things really anymore, 'cos I've had Elvis well it will be five years. Very few incidents since I've had Elvis, and we've got the drugs sorted in response to Elvis. Things have really changed so rather than feeling kind of chronically ill, feeling ill and being ill, I know feel really very well, really most of the time, just a bit sleepy and a bit off my face for a few hours every three or four weeks, but some people pay a lot of money to do that, so it's not such a bad thing. 

But now I have a this dog, who is not always the best behaved dog, or well he's not on duty at the moment so he has different levels of obedience, and at the moment he's showing none. He's a big dog and he takes up a lot of room and he needs looking after, sometimes you know when you've been very, very ill, sometimes it can be difficult to look after yourself let alone then have the responsibility for looking after this living breathing moving creature that is completely dependent on me. So whilst I'm completely dependent on him, it's kind of mutual, because he needs me to feed him and walk him, and pick up his poo. Which I do gladly because you know he's just lovely but you know there's this whole new pressure in my life and I don't want to talk badly of Elvis, partly because he's here, but also because he's great but he's also a restriction.

Having an assistance dog can transform an invisible illness into something that other people can see. Not everyone knows about the different kinds of assistance dogs there are, and having a seizure alert dog can lead to questions from other people. All assistance dogs are authorised to access all areas, including restaurants, pubs and public transport; refusing entry to a person because they have an assistance dog is unlawful.
 
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Holly gets a lot of questions from people about Elvis and finds this nosy and rude because it's...

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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Well, it depends what they ask and how they ask it. So, if they say, oh because Elvis' jacket says support dog on it, quite often people say, 'Oh, what does your dog support?' And I say, 'Chelsea football club.' and walk off. Or they say, 'What kind of support does your dog give you?' And I'll say, 'Invaluable.' and walk off. But on a train it's quite difficult just to walk off sometimes, if people say, 'What's wrong with you?' I say, 'Well that's none of your business. But I can tell you whats wrong with you is that you have absolutely no manners.' Because I think that's an awful thing to say to anybody, 'What's wrong with you', I mean' I find that really offensive and so they usually do get the wrath, to be fair. If people say, 'I don't mean to be nosy, but what does your dog do?' That's usually the one that gets the better response out of me and I don't know why. If people say, 'I don't mean to be rude but'' I usually go, 'That is a bit rude sorry.' But nosy is kind of a difficult one to come back with you know. Maybe I've not thought of something witty yet or maybe it's just difficult. 

And I think as well, I guess there is something in me that you just want to be nice and coming back with maybe a witty or a rude response isn't being nice, it doesn't make me feel good, when I don't tell people, and it doesn't make me feel good when I do tell people either. I feel like I'm sharing things that I don't want to share or I'm being really rude and there doesn't seem to be a way to win and to feel good. Rather than changing the whole of society's attitudes, somehow you know teaching everybody that it's inappropriate to ask such questions but that's a pretty difficult thing to achieve really. I don't know. But he's definitely worth his weight in gold, and that's 30 kilograms, that's a lot of gold [laughs].

I just don't think that people realise that when they're asking me what Elvis does they are asking me to tell them that I have epilepsy and that he's a seizure alert dog and that's quite a lot of personal information for you to be giving to somebody who you don't know and might not want to know. I certainly wouldn't want to know them because they're clearly really nosy, rude inconsiderate people, but that's kind of a bit odd, that every encounter that you have pretty much with a human being, Elvis is also part of that encounter, and whilst that's nice because at least I don't have to go through life by myself, people keep saying, Oh he must be wonderful company, and I'm like 'Oh yeah, I guess.' But I have to put up with all of this as well because he's very visible.

Each assistance dog and their owner form a unique bond. Holly says Elvis has brought her whole family closer together, has changed all their lives, and says Elvis is a particularly 'cool dog'.
 
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Elvis knows how to press the panic button if Holly has a seizure but he also to press it just to...

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Age at interview: 26
Sex: Female
Age at diagnosis: 18
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I know all his moods too. I know this nightmare mood because I've encountered it quite a few times. I know when he gets a look in his eyes he's just not going to listen to what I say. Well I know when he's going to try and do something naughty, and he does naughty things all the time and they make me laugh. I like it that he's not just a doggy robot, you know, he works hard but he plays hard and I think that's the way it should be.

Like when I was doing my PhD at Uni, I lived with one of my friends and we both had a panic button and everything set up in there, and I was just ignoring him, not because I'm mean but because I wanted to be doing something else, and I wasn't giving him the attention that he wanted. And he looked at me and he walked over to the panic button, looked at me, and then he just pressed it [laughs], as if, 'This'll get your attention.' And it was just brilliant, I just thought that was such a clever dog, and so funny. Also because when he presses the panic button all these paramedics come who just think he's wonderful and he gets fussed, and treats galore and I think that's what he wanted. He wanted them to come, but I don't think he realised that I can just cancel it really quite easily. Just the look on his face as well that he did it on purpose. Total like, 'Right, I'll show you.' He was just brilliant, yeah and I liked that and thought that showed character and that's nice.

For links to more information on seizure alert dogs visit our 'Epilepsy resources'.

Last reviewed May 2016.

Last updated March 2011

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